Archive for the ‘Life Reflections’ Category

Okay, so I slacked off enormously with this blog for what seems like an eternity. I have no excuse that really warrants my readers’ forgiveness. I have had health concerns for a few years that have suck the life out of me. I made some big life changes plus a new business and of course parenting. Let’s face it, everyone has something on their plate and it drives me nuts that my commitment to this blog has suffered.

I set out to create something that would help others and me. For a while, it did and then 2013 hit with such a fierce series of blows that bouncing back has been a very slow progress. Every time I thought I could come up for air, another blow hit, but I’m still here. I am a survivor. So…….I’m starting again, hoping that this time, life will allow me to continue this journey of key typing, info sharing, swapping, enlightening and being. If for some reason, things get the better of me again, I will look at guest bloggers to fill in when I can’t find my way through the pile of #*@%$#^! Thanks for your patience and sticking with me.

For years I’ve been hearing the phrase “What doesn’t kill you makes you stronger.” You know things are really nuts in your life when you’ve heard that phrase more times than you can count. I can’t even hazzard a guess how many times it’s been voiced my direction.

This last year I chose not to write and instead to focus on my health and my child. I had one of those years that knocks you flat on you butt over and over again. It started with a cancer diagnosis and ended with a move. I’m happy to say, I’m still here, I survived and though I don’t know if it made me stronger, it certainly was an eye opening exerience that may have made me wiser. So thanks for your patience readers. I’m finding my way back to normalcy and will do my best to post more often. Stay tuned.

There is was again, that voice in your head that won’t go away, the sinking feeling in your stomach that pulls you down like quicksand. Her fever spiked. It looks like a bad cold but is it? It feels like something more.

“Doctor, this seems different to me, if that makes any sense. Are you sure it’s nothing? Please, keep looking I think it’s something else.”

I watched Grey’s Anatomy this evening. The episode showed a mother determined to convince the doctors that her voice, her sinking feeling had to be right. Something was wrong with her child and they were missing it. I watched the moment when they treated her like she was overtired and delusional. In that one moment of watching the drama unfold on screen, I remembered….

I’ve been that mother, the one hell bent on having someone listen. When my daughter came into this world, she came from the result of my instincts. There was nothing out of the ordinary that day. I was not in labour and I was no where a near my due date. I woke up and it was a normal day – all except for that voice, that feeling, that knowing that beyond any logic things weren’t okay. She wouldn’t be here today if I didn’t follow my instincts.

Several months after she was born, I had another go around with the doctors. I was convinced something was wrong with my daughter. She would breast feed but when the hospital tried to bottle feed her; she would cough, gag, and choke. The hospital ignored me and called the pastor to come talk to this delusional mother who was driving everyone crazy. Later we found out she was aspirating into her lungs.

A few years later, her fever kept spiking. She had a rash and swelling. I was told it was Fifth disease, a common routine childhood illness. My instincts told me it was a reaction to her medications. After being turned away several times from the emergency ward as that delusional mother, I loaded my daughter into the car and drove 5 hours to a different hospital. Motherly instincts were right again, she was having an allergic reaction. It was so bad she had pancreatitis.

Instincts are a powerful thing if we listen to them. They can guide us in the directions we should take. If we ignore them, we stumble and sometimes the recovery is long and painful. The old saying “mother knows best” isn’t just to annoy us when our mother is right all the time. It’s a reminder that mother’s have connections to their child that can’t be explained. Instincts are something we should never doubt or ignore because more often than not, they’re bang on. I like to think of them as angels showing you the way.

It’s been some time since my last post. Truth be told, I’ve been stuck for words. There have been many topics to talk about, but putting them to type just couldn’t be done.

I started this year with grand intentions. I believed that finally after all this time, my daughter no longer needed so much of her mother and I could continue my journey back to being me and to all that I love. I was driven and determined to make changes in my life.

Positive thinking has great power. In the face of adversity, positive thinking becomes strength you often didn’t know existed. Strength is a funny thing though. It comes when you have no choice. When you need to make choices, strength is often the hardest thing to find.

The past two months have shaken me to my core. My goals for this year were quickly set aside when a serious health issue came into play. News of my health was followed by the loss of someone dear to my heart, who committed suicide.

So I’m trying to find strength and to understand. I’m fortunate and touched by the overwhelming support of others. The fight for my health will be a long one but I’m good at taking on challenges. I’ve had plenty of practice. It’s the battles of the heart and mind over things I cannot change that scar my soul. It’s the regrets, the what if’s, the whys and wishes. It’s the memories that comfort and haunt.

I believe in this blog and my intentions to help other families and people with disabilities. I’ll continuing plugging away at it as long as there are readers. For now, please understand my posts may be few and far between as I journey into health and healing.

It’s 2013! If you haven’t already made your New Year’s resolutions, then you better get cracking – just kidding.

As television bombards viewers with weight loss commercials to influence our New Years goals, I happily eat every last chocolate the holidays had to offer. Do I feel guilty? Maybe a little, but I don’t need a new year or commercials to push me towards dieting. When I decide my butts too big and it needs some serious help, then I’ll hit the treadmill, down extra fluids and leave the chocolate stash alone.

We all have different ideas of what the New Year means to us. Every year I start out with huge lists of great intentions. I don’t like to think of them as resolutions. To me, the beginning of a new year is simply starting a clean slate to reorganize myself. I look at my current schedule of what’s working and what’s not. I factor in the extra things I would like to do and weed out the useless things that are taking up my time.

No matter how well planned I think I am, there are always things that pop up along the way and the plan needs tweaking. I admit it, I take on a lot. I’m struggling from some kind of false illusion that I can do it all. I’ve realized though, that for the most part if I set my mind to it, I’m a great multi-tasker. I just have to remember to reach for the life vest when I jump in over my head.

I’m looking forward to this year. As each year passes, I can take those opportunities to read, play, write and exercise my holiday pounds away at my leisure. My daughter is becoming stronger and less dependant on her mother. The parental pressures are still very hectic, but she’s not as fragile anymore. Life with a child who has a disability always reminds you of what’s important. She’s my Happy New Year. The schedules, plans, diets, etc., are just the stuff in between.

Happy New Year to all. May the year’s journey bring bright smiles and warm hearts.

I’m going to ramble a bit, just a pre-warning. If you still want to read, I recommend having a cup of whatever your heart desires and why not put your feet up while you’re at it. Here it goes.

My topic today is: The balance between being diplomatic or allowing emotions to do a rapid ascent out of my soul, past my lips and completely lose it. The old saying “when it rains it pours” holds little comfort, yet it’s said every time things go wrong. Is it just short for too bad, so sad, suck it up sister? Hmmm, it seems like it. Then there’s “the squeaky wheel gets the grease.” What’s that saying? It’s ok to scream, yell and bitch to get action? Not really my style. Lastly there’s the act of diplomacy. Sometimes that works well. Other times it’s clear that being diplomatic is an open door for people to feel relaxed and not take you seriously. Read the rest of this entry »

When I was young, Thanksgiving dinner was family time. My mother would make the usual turkey dinner with all the fixins and have the table set with her best china and autumn decor. I remember the aromas that came from that kitchen like it was yesterday and the desserts were simply too hard to resist. Gradually, we all resembled the overstuffed turkey that had graced our table. If we weren’t already prepared for the feast by wearing loose clothing; it was the moment my sisters and I would descreetly undo the top button of our pants and let out a sigh of relief. It was a table filled with love and laughter.

Those years have long past, and getting together with family has become next to impossible. I’m thankful for those memories and hopeful we’ll someday share Thanksgiving again. Over the last few years, Thanksgiving has been spent with other family and friends. Though I miss the old days, it’s these times that I feel so fortunate to be welcomed and loved by so many.

My little girl is having a hard time sleeping tonight and though this might be selfish, I’m thankful for that too. It means I get one more cuddle as I try to get her to close eyes for sweet dreams.

September has come and gone. The first 30 days of school can be daunting for parents of children with special needs. They always are for me. With Halloween fast approaching, I’ll offer up a more dramatic view and compare a new school year to a Hollywood Vampire, Count Dracula.

In his cunning ways, Count Dracula would gain your trust, seducing you into believing he was all that and more. Inevitably, you would descend into the illusion that with him, everything will be okay. Then later, he sneaks in for a piece of you, bite after bite, sucking the life from your body.

When September rolls around, we do our bests to get our children settled in school. By October, you really hope they’ve gotten there. You go through classroom, teacher, support worker, therapists and equipment changes. You have Individual Education Plan meetings (IEP) to set out goals for your child. You explain your child’s needs to your team in the hopes that they will see what you do. You bust your butt making sure everything is ordered, installed and set up as quickly as possible. You push for training and you do training with support workers and other staff. You fight for school buses, inclusion, services, etc. Then if you’re lucky, it’s all in place and you get to breath. If you’re not, you realize that no matter how well planned and what your goals may be for a smooth start, you’re not getting one. Like Count Dracula, all this effort takes pieces of you. It sucks you dry and you’re there, flat on your back, too tired to plump your pillow, wondering what if any fight you have left in you.

I’ll spare you the details on how the start of this school year has sucked the life out of me so far. Though you wouldn’t know it from my analogy above, I actually feel somewhat fearless this year. There is no sign that some of the challenges are coming to an end anytime soon, but I’m not afraid. I’m getting lots of practice fighting for my child and with that I’m stronger. Sure, I’m tired of going through this year after year, but she’s worth it. So in those moments when I feel like I’m down for the count and wonder is there any fight left in me, I learn how to rise from the dead and grow my own fangs.

To those that read my posts, you may be wondering why I haven’t been diligently writing my blog lately. Events out of my control have made it difficult for me to write. There is no doubt in my mind that we all experience times when we have to put everything else aside for family. For that reason, I hope you will understand when I say I’m doing the best that I can. The recent illness and loss of a dear family member has been weighing heavily on my thoughts and I just can’t seem to focus on much else right now.

Today I heard a story of how a young family that has a child with autism, found some much needed help thanks to this blog. Knowing that I have helped in some way is a wonderful feeling. It also brings a sense of guilt when I’m not up to writing. So, forgive me for this short pause in my posts. Guilt isn’t healthy either, so I will forgive myself for this imperfection.

This summer I’ve repeatedly felt like I’m swimming against the current, so to speak. It’s time to come up for air and just float. I’ll write again soon, till then. . . Smile – Nat King Cole

A while back, I read that Conductive Education was an unproven form of therapy. For over 60 years Conductive Education has been practiced around the world yet it’s still considered unproven. If something has been practiced for that long and so many people have had positive results, just what exactly makes it proven? How many studies have to be done in order for it to weigh in as a successful therapy? How many studies have actually been done on physiotherapy to confirm that it is successful?

As you may know from previous posts, the decision was made to send our daughter to a Conductive Education camp this summer. Within the first week of the program at Ability Camp, I watched my daughter do things I had never seen before. Sure to others they might not even notice these small little milestones, but I did. Read the rest of this entry »

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.